Surviving and Thriving With an Invisible Chronic Illness_How to Stay Sane and Live One Step Ahead of Your Symptoms

by Ilana Jacqueline

Do I need to use assistive devices or avoid parts of my normal morning routine?

  Do I have to think more deliberately about how comfortable the clothes are that I’ll need to wear?

  Do I have to make decisions about every meal? What will give me the most energy? What could possibly throw me into a flare? What do I have in my fridge that won’t make me sick?

  Do I go to a job that I worry I’ll lose because my employers might find me less valuable if they know about my disease?

  Do I have the energy for a social life anymore?

  Do I have to spend all my money on medical expenses?

  You’ll also want to decide how much you want others to know when it comes to the details of your condition.

  Are you comfortable sharing the details on what your feeding tube or ostomy bag helps with?

  Do you want them to know about what kind of medications you take, or treatments you take part in?

  Do you want them to know how many doctors you see? How often you’re hospitalized?

  The answers to these questions will vary from person to person. Your long-distance relative who you rarely see and only talk with on the phone once a year may not need to know about the results from your last blood test, but your best friend has probably been waiting to hear back about it just as anxiously as you have. Your co-workers may need to know specifics about how your environment impacts your disease, such as keeping the thermostat at an even temperature, not being able to sit through long meetings, or having to telecommute from time to time. You may even want to alter your responses based on how much time you have to explain it, whether or not you’re in a professional or social setting, or simply how open you feel that day. Whatever your decision, it helps to develop a standard elevator pitch.

  How Can I Quickly Explain My Disease?

  There’s been far too many embarrassing moments in my life where I’ve had to introduce myself and then my disease in the same breath. Quickly summing up primary immune deficiency (let alone the other illnesses I’ve been diagnosed with) in one breath takes Olympic lungs that I just don’t have.

  Ever heard of something called an elevator pitch? It’s a term used to describe a short statement that quickly sums up a business proposal. Getting a person to understand the intricacies of life with a rare or chronic disease in just a few short words will be useful in many life situations. An elevator pitch may end up being one of your greatest tools when it comes to advocating for your needs or accommodations. Here are some tips on perfecting your pitch quickly and accurately without getting that blank stare in return.

  Ask Before You Explain. It’s rare, but sometimes people have heard of your disease and don’t even need to hear your spiel. Before breaking into the song and dance, preface your pitch by saying, “I have a disease called primary immune deficiency, are you familiar with it?” This statement does two things. It verifies whether someone knows what your disease already is, and it gives them the option of asking for more information if they don’t. After all, nothing is weirder than an unsolicited lesson on your complicated health issues.

  Don’t Get Too Technical. Instead of focusing on the pathology of your disease or breaking down the genetics of it, try to focus on how the disease affects you as a person. You may want to say that because of this disease you’re more susceptible to infection, which means you might have to be more cautious than the average person. You may choose to say that your body doesn’t produce the natural defenses against infection, so you have medication to replace it. Or, that some days you feel completely normal and can function just like everyone else, and some days you feel like you got hit by a train.

  Use Analogies or Familiarities. What can you relate your disease to that this person will understand? This can be altered for situations in which you’re speaking to children, adults, and even doctors who are unfamiliar with your condition. People with Crohn’s disease might say something like, “Living with Crohn’s is like carrying around a ticking time bomb; one wrong bite and you could set off a painful stomach ache that can knock you out for the rest of the day or week.” I’ve heard others describe immune disorders as, “Having a chronic illness is like being the only one casually walking through a war zone every day without any armor on, and then people are shocked and confused when you get a few bullet holes in your chest.”

  Mention What It Doesn’t Affect. This part is one patients often forget to include. Don’t forget to tell inquiring minds what you still can do despite your disease. Remind them that you can still work, go to school, see your friends, or go out for a few hours a day. Let them know if you can still do things like communicate online or on the phone and see your family and friends. This helps remove yourself from the pity equation and gives them an in to be included in some of these parts of your life.

  Keep It Short and Shut It Down. The whole point of an elevator pitch is to avoid a long-winded (and often depressing) conversation about your disease. Keep your explanation short, concise, and to the point: “This is what I have, this is how it works, now let’s go get some tacos!” A good way to bring the conversation to a screeching halt is to say something along the lines of, “It’s kind of complicated, but I hope that explained some of it. You can always Google it later if you want. Wikipedia might give you a better idea of how it all goes down.”

  Remember that the way you discuss your disease is the way that others will interpret it. If you give a humorless, depressing description of your disease, you’ll inevitably leave your audience bummed out. Don’t be afraid to have fun with it. For instance, you could finish your speech by gently grasping their shoulder and saying, “…and it’s highly, highly contagious. Just kidding!”

  My Elevator Speech

  When it came to developing my own elevator speech, I knew I had to find a way to describe my rare diseases in a more familiar way. I also realized that while my diseases were serious, it would create a very weird vibe if I went into the doom and gloom of how it impacted my life. I had to keep it light. It took a while, but here is the elevator speech I ultimately came up with:

  I have two diseases, primary immune deficiency and dysautonomia, ever heard of them? That’s okay. No one usually has! One affects my immune system. Have you ever seen that movie The Boy in the Plastic Bubble? It’s kind of like that, but not as serious and way more under control. Just give me a heads up if you have anything contagious though, okay? I also have a neurological disease that throws my autonomic system into disaster mode. Anything that should be automatic in the body—heart, sleep, temperature, and digestion—is basically running on manual via a ton of medication. The bad news is that there’s not really any one specific treatment for this. The good news is that I’ve become extremely multi-task-oriented.

  Ready? Now it’s your turn to talk! How would you explain your condition to a new person in your life? Write down some elevator speech drafts in your journal and then try them out.

  Extended Family and Estranged Family

  Your nuclear family is one challenge, but your extended family and your estranged family are a whole new ball game. Keeping your extended family in the loop should be done on an as needed (and as wanted) basis. Technically, if your disease is not going to affect your extended family, they don’t need to understand what you’re going through in-depth. If you don’t prefer their help with things like getting to and from doctor’s appointments or having them visit while you’re in the hospital, there is no rule saying you have to say anything other than, “I’m sick, but I’m managing it.”

  If you have an estranged relative, maybe a parent who you no longer keep an active relationship with, I find the best way to communicate any update in your health is via email. After all, this isn’t a discussion; it’s a notification.

  Dealing with the Accusations of a Factitious Disorder

  Experiencing your loved ones turn away from you during a period of illness is heartbreaking. However, there are even worse scenarios that can occur when sharing the details of your disease. For exam
ple, one mother, Paula, recalls the horror story of her time in court fighting for treatment for her youngest child with an immune and antibody deficiency disease: “My husband’s accusations that I was ‘over-medicalizing’ my child caused the Department of Children and Families to start an investigation on me. It was unreal.” As unreal as it feels, it is ignorant to think that even court judges are above the standard response to a complicated and invisible illness. Paula continues, “The judge, in our case, said she did a little bit of searching online about my daughter’s illness, and that she concluded that it was not a real disease. I was floored. I was standing there with medical documents clearly stating her diagnosis from top board certified doctors. Throughout our time in court the judge refused to look at the documents and refused to hear from my daughter’s doctor as an expert witness.”

  This situation seems difficult to believe, but unfortunately, it’s one that’s happening all too frequently to families with children touched by invisible illness. The number of autoimmune and other inflammatory diseases without known cures is on the rise. Medicine is slowly catching up in recognizing that they do exist.

  When a child is sick and doesn’t recover in a reasonable amount of time there may be inquiries into whether or not the child is being abused, neglected, malnourished, or whether they’re having behavioral issues or not. When these kinds of situations are called into question during legal proceedings it can result in loss of custody, even when a parent is trying their best to get answers. For Paula, her case was finally settled without losing custody. She was also able to find support from other parents who had been through similar traumas. Though Paula’s case is extreme, it is illustrative of the common response to accuse rather than relate.

  A problem Wiggins identifies as also being particularly damaging for the undiagnosed is being accused of faking their illness. “Patients suffering without diagnostic confirmation may also suffer inaccurate accusations like factitious disorder (formerly known as Munchausen).” And, family members aren’t always the only ones capable of damaging accusations. Wiggins points out that even doctors can do it. “In my experience, doctors are trained to be experts and pride themselves on being good diagnosticians with the ability to provide appropriate treatment. I have witnessed countless medical professionals assure a patient with a rare diagnosis that his or her unique approach to medicine will provide a cure or solution, when in the end, the doctor was not able to affect any change. This is frustrating for both doctor and patient. When doctors can’t find solutions, they respond the way many people respond to failure—blame. In this case, a doctor feeling inadequate to solve a medical problem may blame the problem on the patient or caregiver by referencing factitious disorder.”

  No one needs a heaping pile of blame in addition to the already burdensome life of chronic illness. In my experience, I grew up around doctors who accused me of faking or exaggerating symptoms. They sneered. They prescribed me medications I’d already tried. They told me to change my diet, exercise regimen, or sleeping schedule. They told me it was all in my head. Or, they would take one look at my chart and assure me it wasn’t all in my head, but that nothing could be done. In the absence of blame and frustration, there is only one remaining response: a declaration of powerlessness and an apology because they know they won’t be the one able to help you.

  When it comes to dealing with doctors who believe you may be faking your symptoms, Wiggins advises: “If you are someone who has been accused of faking symptoms or factitious disorder by your doctor, stay calm and consider finding a new medical provider. Be honest with your treatment team, tell them if you have experienced this accusation and demonstrate your willingness to cooperate with diagnostic or investigative suggestions that will lead to proper diagnosis.”

  When someone blames you for a problem, your automatic response may be to defend yourself. Defensiveness only increases your own anxiety and feelings of self-doubt. In the instance of being blamed or accused of something untrue, instead of defending, try to problem solve in a productive manner by seeking treatment by professionals that think outside of the box and are eager to support your health and wellbeing. Though your first reaction may be feelings of anger or hopelessness, try to resist. You know your body; don’t allow your observations to be denied. You may not have your answers yet, but you must keep working towards them through meticulous documentation, organization, and by not letting your emotions color your path to better health. Sometimes that means seeing a therapist to help you deal with the real impact of living with incredible medical stress. This is also helpful on another level since your primary doctor may request that your mental health be professionally evaluated.

  Sharing Your Truth, Establishing Boundaries, and Finding Forgiveness

  Hopefully, this chapter has provided some understanding of how and why others react the way they do to mentions of your disease. The tools learned here, like your elevator speech, will help you to share your story quickly and without awkwardness. You should now have a better idea of which people in your life you may need to take a step back from and which people you should give a chance to understand what you’re going through. Finding forgiveness for those who fail to support you along the way takes time and many conversations you never thought you’d need to have with the people who are supposed to love you no matter what.

  For many people, family is a tough social network to navigate, whether they live far away or intentionally distance themselves. When family members make themselves unavailable, it’s good to have new faces to turn to. In the next chapter, we’ll discuss how you can keep your illness from alienating you socially.

  Chapter 4

  Making New Friendships and Salvaging Old Ones

  Didn’t think you’d need a how-to guide on how to make friends after kindergarten, did you? Don’t be embarrassed. Chronic illness can make you miss out on a lot of great things, including building those friendships and relationships that you need to stay strong and feel normal. When you’re just trying to stay above water with work or school, getting your treatment settled, and trying to find your footing each time a fresh wave of symptoms hits, who has time for a social life?

  The answer is that you do. Or rather, you should make time. Think of your social life as being as vital as any other treatment for your disease, not as a privilege for the healthy. The U. S. National Academy of Sciences conducted a study in 2016 that “found that a higher degree of social integration was associated with lower risk of physiological dysregulation in a dose-response manner in both early and later life. Conversely, lack of social connections was associated with vastly elevated risk in specific life stages” (Yang, et al. 2015). In other words: Make friends or risk spending most of your time focusing on and thus intensifying your worst symptoms. Your network gives you an outlet to forget, refocus, push through, and at the worst of times, well, they might just make you laugh.

  As you move out of high school and college, or you need to resort to home schooling or telecommuting for your career, you’ve probably realized that it is really hard to make friends when there aren’t that many people you get to interact with daily. Try to remember that inevitablity there will be periods in your life that you will be alone. This isn’t exclusive to those with chronic illness; this is an entirely human experience that happens to everyone as they struggle to figure out who they are and with whom they feel comfortable. Don’t panic. This isn’t forever. Remember what we discussed in chapter one about acceptance. You aren’t defeated. You aren’t forgotten. Don’t heap any more self-defeating thoughts on to yourself. Accept that this moment happens universally.

  Just because you’ve been alone for a long time doesn’t mean that you can’t have a social recovery. There is always a time and a chance to make new friends or recover old ones. “Coming out” about my disease was like stepping out into the sun while squinting. I didn’t know what was going to come at me. I worried about insults and accusations of faking or attention-seeking. But, when I finally opened
my eyes and took in the world around me, I found understanding and compassion from others that I hadn’t even yet learned to give to myself.

  This chapter will give many examples of how to maintain old and new friendships. Ultimately, the true test of a lasting friendship is how badly both of you want it to continue despite whatever you might endure in life.

  How to Maintain Friendships

  Chronic illness has made me look at my friendships in a totally new way. The nature of each friendship is different. For example, I have a friend I have dinner with every few months, and we end up catching up for hours because we don’t see each other often. I have a friend who works near my neighborhood and likes to come by on her lunch hour and hang out with me before she heads back to work. I have a group of friends that I gather for parties at my house, even if I haven’t seen them since last year’s pumpkin carving bash. I have a friend in New York who I only got to see for twenty minutes earlier this year, but being wrapped up in her arms had me feeling all the emotion and love of a twenty-year-long friendship.

  Friendships change according to the seasons of your life. This would happen whether you were sick or healthy. Sometimes you might take a sabbatical from a friendship and find yourself walking back in as if nothing has happened a year later. Do your best to hang on to the good friends, the ones who make the effort to support you even when you can barely support yourself. Here are a few ways to maintain friendships, even when you find yourself unavailable.

  Speak Up: Don’t be afraid to tell your friends what’s happening in your life. If you’re having a particularly rough flare, at least give them the opportunity to be there for you by letting them know. I was surprised how many people stepped out of the woodwork when I finally started opening up about how often I was in the hospital.